News and commentary on the autism epidemic and my beautiful boy who is living with autism.

December 23, 2005

The Age of Autism: Missing in Mississippi - Part 2 or 3

The Age of Autism: Missing in MississippiBy DAN OLMSTEDUPI Senior Editor

In this -- the second of three parts recounting our reporting on autism since the start of the year -- we revisit the first child ever diagnosed with the disorder.

On a sweltering late August morning we climbed the stairs to a second-floor law office in a small town in Mississippi. We introduced ourselves to the brother of Donald T., the first person ever diagnosed with autism.

Donald was born in 1933; he came to the attention of the medical world in 1938, when his parents took him to see the renowned child psychiatrist Leo Kanner at Johns Hopkins University in Baltimore. Over the next four years Kanner saw 10 more children exhibiting the same unique behavior syndrome, and in 1943 he introduced the disorder in an article titled, "Autistic Disturbances of Affective Contact."

While Kanner did not identify Donald by his full name, we were able to determine his identity and learned he was still alive at age 71. That's what brought us to his brother's office -- looking for clues to the roots and rise of a devastating disorder that seemed rare when Donald was born, but now affects 1 in every 166 U.S. children.

Donald, his brother told us, was out of town. But speaking in a courtly, deliberate manner and without any prompting on our part, he told a remarkable story: At age 12 Donald had been living with a nearby farm couple. "One February day, I think it was, they came to (town) with Don. He had a bad fever and was obviously sick." His joints were swollen and stiff, his brother said.

"My father and mother took him to all various places for examination -- they went to Mayo Clinic, brought him back. He lost his appetite and was terribly emaciated. But anyway, my father was talking to a doctor (in a nearby town) he happened to run into and said, 'It looks like Don is getting ready to die.'"

The doctor said, "What you're describing sounds like a rare case of juvenile arthritis." Diagnosis in hand, his parents took Donald to the eminent Campbell Clinic in Memphis, where he was treated with the then-standard remedy, gold salts. "He just had a miraculous response to the medicine," Donald's brother said. "The pain in his joints went away."

And here's the kicker: "When he was finally released the nervous condition he was formerly afflicted with was gone. The proclivity toward excitability and extreme nervousness had all but cleared up." He also became "more social."

In other words, Donald got a lot better. He went on to college, joined a fraternity, worked at a bank, owns a house, drives a car, belongs to the Kiwanis and the Presbyterian Church and plays a good game of golf despite one fused knuckle left over from the arthritis attack.

And now, in retirement, he travels the world. That explained why he wasn't in town -- he was off having a good time. Last stop: Italy. Favorite city: Istanbul. Because Donald did not respond to a request for an interview made through his brother, we are not identifying him at this time.

Most of the rest of the first 11 children identified by Leo Kanner depended for the rest of their lives on the kindnesses of strangers: They lived in back wards or, if they were lucky, group homes or other sheltered arrangements.

Donald's brother told us Johns Hopkins researchers have been in touch every decade to check on Donald, but we're not aware of any published accounts of Donald's improvement following the gold-salts treatment -- something his brother volunteered to us in a half hour of conversation.

Regardless, the fate of the first child ever diagnosed with the disorder seems more relevant today than ever before. One reason: Some parents, under the guidance of several hundred doctors who have broken away from the medical mainstream, are trying a variety of medical interventions to treat their autistic children.

These range from restrictive diets to cod-liver oil to methyl B-12 shots to the most controversial technique, called chelation (key-LAY-shun). This involves giving a child a drug -- orally, via creams or in some cases, intravenously -- that is designed to pull heavy metals, in particular mercury, from the body. The process carries risks: Earlier this year a 5-year-old autistic child died while undergoing intravenous chelation in Pennsylvania.

The theory behind it -- rejected by federal health authorities and most scientists -- is that in most cases autism is actually a form of mercury poisoning. The mercury in question came from some childhood immunizations, which beginning around 1930 contained an ethyl-mercury preservative called thimerosal. The Centers for Disease Control and Prevention, the American Academy of Pediatrics and other experts say that concern is unfounded, but they recommended in 1999 that it be phased out of childhood vaccines in the United States as a precaution.

The questions raised by Donald's improvement are both simple and potentially significant: Did the gold-salts treatment alleviate his autistic symptoms, and if so, why?

Did the juvenile arthritis -- an autoimmune condition -- and the autism improve markedly at the same time because both were responses to a toxic exposure? Did the gold salts help pull mercury from Donald's body, and/or reduce an inflammatory immune response in his brain? Or is it all coincidence, or a memory blurred by the passage of 59 years?

Such questions, or course, are speculative, and some readers have criticized us for even asking them, given the assurances of the CDC and medical groups and the importance of immunizations in preventing infectious disease.

Wrote one reader over the weekend: "I can't morally just stand by and watch you exacerbate a situation where children are dying because fearful mothers didn't vaccinate. ... It is doubly sad when you consider that instead of your causing the deaths of children, you could have used your bully pulpit to do something good for autistic children."

But something good did seem to happen to one autistic child who was about to die: Donald T. All we're interested in is, why?

In the new year we'll look more closely at whether chelation and other treatments appear effective. First, though, we'll wrap up this review by recounting our efforts to find autism in U.S. children who have never been vaccinated.